Thursday, June 28, 2012

Measuring Improvement, Part 2 - Monthly Averages

On June 19th, I posted my concern about whether I was actually improving due to the prescriptions and supplements I'm taking. While I have the overall sense that I may be slowly improving, I wasn't certain if the numbers would support that. Now I've had a chance to calculate monthly averages from my health chart, starting from September, 2011.

First, a few notes about my health charting: Among other things, I chart an overall daily health rating on a 1 to 100 scale, using multiples of 5. My scale is a little different than others, as I think it is skewed to the high end. 100% is how I felt on my worst days while healthy. I set the bar low for what I consider 100%. So for a healthy person reading this, an 80% rating may sound pretty good, but I assure you, it feels like I have a mild to moderate flu....all day long, usually with kidney pain and shortness of breath.

My "crash" cut-off is generally around 70%. Anything lower than that often means I'm house-bound for the day. 50% or below often means I'm bed bound for the day. 0% is dead.

After reading many, many stories of people with severe ME who can barely left their heads from the pillow, I left myself plenty of room at the bottom of the scale. Hopefully, it will never come to that. The worst I've ever rated was 40%, which only lasted two days. Most days fall between 60 and 85%. The highest I've rated was 95%, perhaps 8 to 10 times. I use objective measures to try to prevent these ratings from becoming biased over time.

In the Notes section below, any supplements or drugs noted were begun at or near the beginning of the month.

June 78.52 Upped Equilibrant dosage to 5 tab/day; got a cold early in month;

ImmunoStim ran out and is on back order.

The average of all these monthly averages is 77.15. So any month above that average I'll consider a good month, and anything below is a bad month. Overall, I appear to be holding steady, more-or-less. But, there are a couple of theories I might derive from these averages:

My two best months, and the only two months with averages above 80% (Dec. and May), were the two months when I began taking herbal anti-virals (ImmunoStim and Equilibrant, respectively). Although it's still too early to make a final determination about Equilibrant, I wonder if these antivirals produce an initial rally by the immune system, only to allow the immune system to adjust and settle back into a dysfunctional state. Others on ME/CFS message boards have espoused this theory too.

It's also possible that the dip from May to June was due to my running out of ImmunoStim, which is currently on back order. The combination of the two herbal antivirals seemed to be working well for me in May, and the dip in June coincided with my running out of ImmunoStim. Only further evaluation and testing will tell. I'll update this in a few months.

I also note that, for the most part, my swollen lymph nodes and weekly sore throats went away in December when I began taking ImmunoStim, so do I believe it has been effective. I also believe the Equilibrant may be flattening my peaks and valleys, making each day more predictable, but not necessarily improving the average.

I can't honestly say that the B12/methylation protocol has helped at all, but I may try tweaking it.

8 comments:

Patrick, its really interesting to read about your system for rating your health. I do something similar in my own way. I track pain, fatigue, activity, mood & migraines out of 10 and plug them into excel to make a chart. I've found it good to be able to see how they interact. But recently I have been doing a lot better and I've begun to wonder if a day when l have a level 8 fatigue is really as bad as a level 8 fatigue a year ago. I kind of doubt it but as these things are subjective its hard to know for sure. I'd love to know more about what objective measures you have used to prevent your measurements from becoming skewed over time.

Don't be discouraged by your results, from my experience I think it is hard to see improvements - they are usually very gradual for me. I have improved a lot over the last 4 years but its often hard to for me to see any improvement over the space of a few months. Often it feels like the basic level of fatigue stays the same but then I suddenly realise that I'm able to be a bit more active without crashing. Its usually when I do something new and realise that there was no way I could have done this a year ago!

I too track different symptoms on a daily basis. I use a table format on MS Word, but only because I'm not too familiar with Excel. I really should switch to Excel one of these days, so I can make graphs like you. Anyway, I rate my three main symptoms daily on a scale of 1 to 10 each: Flu-like malaise, kidney pain, and shortness of breath. Then I have a fourth box for notes on any additional symptoms. I combine the results of these four boxes to get my daily rating.

To try to keep things objective, I take my temperature and blood pressure (although not every day) When my temperature is low (below 97.5) or my blood pressure is low (diastolic below 100), I'm usually crashed (below 70% overall). I try to use other landmarks, like whether I get short of breath climbing the flight of stairs in my house. Admittedly, it's not perfect, but it's the best I have.

I appreciate the words of encouragement. Truely. I'm glad that you are slowly getting better. I hope I can say the same in a year or so. Like you said, maybe I am already and I don't yet realize it.

Thanks for replying! Its really interesting to hear another person's system. I hadn't really heard of other people doing this before but its not the kind of thing that usually comes up in conversation! ;)

I hadn't thought of using temp or blood pressure but it makes a lot of sense. I use a heart rate monitor to pace my activity & I often notice that my heart rate is much higher doing basic things around the house on the days that I'm struggling, so maybe thats another objective measure I could use somehow. I write everything in a diary - along with general comments, what activity I've done meds I've taken & sleep before I add them to excel. Honestly I don't know Excel very well either but I'm figuring things out as I go along!

I've been tracking things for well over 2 years now & the benefit for me has been more in seeing the immediate/short term results than in any long term comparison. When I have crashed I've been able to look back & see why and over time I've begun to learn what to avoid. But as I said because my measurements are objective I'm not convinced that they don't get skewed over time - if I look back I can see some improvement from 2 years ago but not as much as I feel I have improved. And this time I'm trusting how I feel!

I am sure you will start to get better, it all takes time. You're giving your body every chance to heal itself and I'm sure that given enough time it will begin to do so! Take care of yourself!

Miriam, you inspired me to switch over to using Excel to track my health and I can't believe I didn't do that sooner. It' so east to create graphs from your data and look for relationships between various factors. I'm actually using Google Documents' spreadsheet, but it's basically the same thing as Excel, except it's nice that you can always access it from any computer. And I can give access to my parents or anyone else who wants to look at it.

Thanks for the words of encouragement. They were much needed after hearing a lot of discouraging things lately. Please keep in touch and let me know how you're getting along.

Also keep track of sleep quality as it will effect your function during the day. I also tracked food in my diary. When I finally applied to the SSA for disability my diary was used to help prove disability.

Thanks Baffled. I track my food intake every day too. I used to track my sleep too, but every since I started taking small amounts of melatonin, I consistently get 8-9 hours of solid sleep so I stopped tracking that.

That's good to know about the SSA procedure. Thanks for much for your feedback, especially in your earlier comment about getting out of the push/crash cycle.

I just started 1mg of melatonin to help me get to sleep. LOVE that stuff. I'm also using a small dosage of trazadone for sleep which has helped with sleep disturbance. I wasn't sleeping well prior to contracting CFS so I was in real trouble after I got sick. With the two meds I can fall asleep and get a good quality sleep for 6 hours and then broken sleep after that, which is a huge improvement for me.

The thing to remember about SSA disability is that it is all about proving that you can't work which isn't the same thing as proving you are sick. As a lawyer I'm sure you will appreciate the distinction.

I'm with you on the melatonin...I take about 0.5mg before bedtime and it has really improved my sleep. The best part is, it seems to have re-trained my brain how to sleep because often times I find that I don't need it any more.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.